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Thursday, September 29, 2016

Last week I got into the poison ivy
again. Now, I have it for the second time in my life. The first time was about
this time last year during the fall yard cleanup.

My husband, self confessed as never
having had the itchy breaking out, told me I’d get over it if I’d quit
scratching. He read up on the internet about several remedies. I tried
cortisone cream, cortisone cooling gel, aloe gel, etc, etc. Anyway, before I
broke out the baking soda/vinegar paste, in desperation I called my doctor’s
office. The rash had stayed a week and I wanted it to be gone.

“Any questions about the
prescriptions?” the girl at the counter politely asked.

“No,” I answered as I swiped my HSA
card and rubbed my arms trying to relieve the itch.

Back in my car, I read the
complicated directions: Take four pills today…blah, blah, blah. I hadn’t eaten
much so I downed two pills and figured I’d take the other two after real food.

I seemed fine throughout the day.
Toward evening, my tummy was a little upset, and I went to bed early because I
was so tired. Being tired doesn’t equate falling asleep so I read until about eleven
o’clock. At one o’clock, I awakened with an acidic burning in my throat and
made a dash to throw up. It seemed to be my old nemesis acid reflux on
steroids.

Since I couldn’t possibly lie down
with the burning, I read the paperwork that came with the prescription. Golly
gee, some folks have nausea and vomiting with this medication. Aren’t I the
lucky one?

After breakfast this morning, I
took today’s pills. I immediately noticed a bitter taste. “Wow, that was a
bitter pill to swallow,” I said. I hadn’t even noticed the bitterness the other
time.

Talking about bitter pills to
swallow, I thought about it figuratively as well as literally. The expression “A
bitter pill to swallow” means something unpleasant or painful but has to be
accepted. I thought about bitter pills that I’ve had to swallow in my lifetime.
The bitterest of all was when Jim was diagnosed with dementia. Oh, neither of
us accepted it at first, and that’s not such a bad thing. We explored all the
other possibilities—a stroke, blood sugar, vitamin deficiencies, depression,
heart problems—through an endless cycle of testing.

The rollercoaster of emotions came
to a screeching halt when an MRI revealed brain shrinkage consistent with irreversible,
unstoppable dementia. Big bitter pill to swallow.

We all have our own bitter pills.
Some of us have broken relationships, undeniable mistakes, failures, heartache,
illness, pain, suicidal thoughts, stress, bitterness, self-loathing, or many
other human emotions.

Emotional victims can be emotional
survivors with the correct resources or support. Life throws pills at all of
us, and full bottles at some. It is so important not to lose our way or give
up. Fortitude is the antidote for the poison of adversity.

When going through difficult times,
I have always been thankful that I’m not famous. Just think of the stress on
movie personalities, politicians, famous athletes, and others in the public
eye. Not only do they have to deal with their own doubts and embarrassing
moments, all the armchair pundits worldwide have to throw in their
holier-than-thou tweets, Facebook posts, blogs, op-eds.

We are creating an unhealthy
virtual environment. People used to do their rants and raves in the privacy of
their homes where only family and close friends knew how bizarre they were.
Now, the internet explodes with conspiracy theories, blatant lies, and
innuendos.

Friends and family use expletives
in angry, small-minded conversations with others who aren’t of the same
political persuasion, religion, ethnic group, or were born with a different
color skin. It’s disturbing that we feel that rudeness and hatefulness are
acceptable.

As for my bitter pills, I remembered
that a spoonful of sugar helps the medicine go down. What kind of sugar do I
have in my house this time of year? Candy corn! Two pieces of candy corn wiped
the bitter taste from my mouth. I’ve solved the literal bitter pill problem. Even
a semi-load of candy corn won’t help the hurting people of the world to figuratively
swallow a single bitter pill.

Wednesday, September 21, 2016

Today is World Alzheimer’s Day.
Currently, an estimated 47 million people worldwide are living with dementia. Alzheimer’s
is a global problem, and researchers around the world are working diligently to
find a cure.

We already know that Alzheimer’s is the most expensive
disease in America. It also has a devastating economic impact worldwide with a cost
of $818 billion. Healthcare for persons with dementia are too specialized which
increases the cost.

According to the World Alzheimer’s Report, “Currently,
healthcare systems struggle to provide adequate coverage of diagnostic
services, and care is too often fragmented, uncoordinated, and unresponsive to
the needs of people with dementia and their families.”

A better approach, according to the
report, would be to rebalance the services to primary and community with case
management. Case management could be more effective if (a) caseloads were manageable,
(b) clearly defined with training and adequate preparation and (c) the case
manager would be empowered to coordinate care among providers.

This sounds like the purpose of the
HOPE for Alzheimer’s Act!

We are looking forward to a world
without Alzheimer’s, but until then, the report rightly observes, palliative
and hospice care needs to be improved for those with dementia. It is important
to consider preferences of people with dementia about end-of-life issues.

Only 40 – 50% of people with
dementia have received a diagnosis. The executive summary of the report concludes
with, “We need to focus on achieving high coverage of dementia diagnosis and
continuing care, both to ensure access to current evidence-based treatments and
support, and to create systems and platforms with the capacity to deliver, with
equity, much more effective treatments in the future.”

On World Alzheimer’s Day 2016,
advocates will continue in their efforts to increase research funding. Caregivers
will continue to care for their loved ones. Hospice teams will help families
face the inevitable end of this incurable disease. Families will pick up the
pieces and go on living without fathers, mothers, spouses, siblings, aunts,
uncles, friends, or even children who die from dementia.

Every year Jim and I went camping
in Colorado. The first year, 1983, we arrived in Estes Park during the annual
rodeo, and if Jim hadn’t had a good line of gab, we wouldn’t have had a place
to camp. Then, our planned drive up Fall River Road was cancelled because of
snow. To Missouri people, snow in July was surely an oddity. Eventually, we
discovered August was the perfect month to visit the Rockies. That is, perfect,
except for the hordes of tourists.

So, we came up with a plan to go on
Labor Day weekend after the bulk of the tourists had gone home. The aspens had
turned fall colors and elk roamed the streets of Estes Park. We were in wildlife
heaven! We pitched our tent at Moraine Park and prepared to enjoy the peace and
quiet of cool mountain mornings.

On our
third night of camping, I woke up cold. I rolled over on my back and splat, icy
cold water dripped on my nose. Splat, splat, splat, the cold water began to
drip faster. I covered my head with my sleeping bag and went back to sleep.

The next
morning, Jim woke up early, as usual. He sat up and hit his head on the tent. He
started punching the drooping tent trying to remove the six inches of snow that
had fallen during the night. Ice water pooled in the floor of the tent and our
sleeping bags were soaked. Snow continued to fall during the day; luckily, we
found a cabin for the next night. Jim’s comment on the situation: “This will be
a good story to tell our grandchildren someday.”

Life was
much simpler then than it is now. September is one of my busiest months, and
sometimes, I think the days of September have become the “daze” of September. The
month whirls and swirls as events and deadlines surround me.

My to-do
list has turned into a to-do book. I’ve broken it into four different
categories trying to keep up with everything. The month begins for me on Labor
Day weekend with the first of two family reunions, followed swiftly with our
team fundraiser. Walk to End Alzheimer’s is always in early September, and I
haven’t missed one of those since 1998. That definitely leaves out vacationing
of any kind.

Just for
fun, let’s throw in a club meeting, speaking at a conference, updating websites
for numerous events, two dinners (on the same night!), appointments, mowing
grass at home and in town, new projects, finishing old projects, and on and on.

A few days
ago, I complained that I retired from a forty-hour-a-week job to sometimes work
from daylight to midnight. The problem with retirement, as I see it, normal
work hours don’t apply. It’s like being on call twenty-four hours a day without
defined meal breaks.

Harold
looked over my to-do book, and said, “It seems to me that most of your time is
volunteer work.” This was after a marathon of working on my photo drive, at his
insistence, which had nothing to do with my volunteer work, or did it? After
all, other than my sunset photos, most of the photos were of, you guessed it,
volunteer events.

“Well, I
don’t want to work all the time,” I insisted, “but I don’t want to sit around
doing nothing all day either.” There you have it: the dilemma—too busy, or too
bored. Where is the happy medium?

One new
thing I’ve thrown into the mix of activities is line dancing exercise class
three days a week. I get my exercise, laugh, and forget the busyness and “daze”
of September.

Yes,
sometimes, I’ll look at the calendar and wonder what the heck I was thinking.
Or not thinking. But, you know what? I’ve chosen this lifestyle of my own
freewill. It is the life I find meaningful, fulfilling, and purposeful.

Besides,
before you know it, it will be October. Mmmm. SBW pajama party (guess who’s in
charge), Business Women’s Week, proclamation, board meeting, chicken dinner, Halloween,
…the to-do book is already running out of pages.

One thing
I really look forward to in October is our “girls” vacation with my mom and
sisters. Life is good. Busy, but good.

Sunday, September 11, 2016

Saturday morning, Walk to End
Alzheimer’s day, was the big day we’d been planning for since shortly after the
last walk. A night of thunder and downpours had calmed to a spattering of rain.
Almost zero percent chance of rain, yet there it was big as life.

“It should be out of here by eight
o’clock,” Harold told me.

“We start set up at six,” I
groaned. I pushed the button on the coffee pot. For once, I’d prepared it the
night before. I might have been a little concerned about hearing the 4:30
alarm.

I had been loading my car for days
in preparation for the Walk. Banners, table, books, supplies, camera, notebook,
clipboards, etc. had been loaded and checked off my long list. The first text
of the day came in letting me know we were shooting for 6:30 to give the rain a
chance to move out.

“You better put your books in a
Rubbermaid,” Harold said. “Even if the rain quits, the ground will be wet.”

“Good idea,” I said. For once, I
had not worried about rain and had left the books in the shipping boxes. We
transferred books to the tub and Harold carried them to the car and placed them
in the back seat like the final piece of a puzzle.

With my extra thirty minutes, I had
time to sit down with a cup of coffee, and to look at the latest text messages.
WyAnn had run out of space in her vehicle, and Jessica’s was already fully
loaded. I admitted, I was out of room in my car too. Then, a text from my
daughter-in-law asking if I needed her to bring her truck. She offered to help
WyAnn, but when I called, WyAnn had recruited help from family.

The rain let up, so I gathered my
purse, water, and my just-in-case rain jacket. On my way out the door, I saw
the tub with my team’s T-shirts. I grabbed them up and put them in the
passenger seat.

Harold, who planned on going to the
walk at a more appropriate hour, opened the garage door for me and began to
quiz me: Cell phone? Camera? Purse? Yes, yes, and yes.

“I don’t know where the lever is,”
I replied. I didn't recall raising the hood in the six years I’ve had the
Malibu. Still, finding the release was much easier than finding the battery. It
was well hidden.

I texted the group, “My car won’t
start. I may be late.” Then, I texted Stacey, and she said she was on the way.
I didn’t even want to consider how long it would take us to transfer everything
from one vehicle to the other.

About the time Stacey arrived,
Harold had attached jumper cables and the car started. “Don’t shut it off until
you get there,” he warned me.

Stacey followed me to the
fairgrounds. I was anxious because I knew we only had a short time to set up.
When we arrived, the streets were lined with vehicles. Oh, great, I thought,
there’s another event going on.

What?
There must have been twenty guys setting up tables and chairs, tents, banners,
flags, and holy cow, to help me unload my vehicle. I knew WyAnn said some of
the baseball team from SFCC would be there to help, but we’d never had this much help!

For such a disastrous start,
everything was smooth sailing after that. The sky cleared and with a little
help from my friends, and friends of friends, the stress just evaporated like a
drop of water on a sunny day.

My son took my car to W-K while I
was at the Walk. That’s when I learned my six-year battery had gone belly up.
How long had I owned my car? Just a little over six years.

But, hey, the sun was shining,
people were smiling, and with a little help from my friends and family, all was
well.

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This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

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Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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